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Monday, 6 June 2011

Sick or Disabled.

Back in 2008, the then Minister for Disabilities, Jonathan Shaw, came to our humble CLP to give a talk about the new Employment Support Allowance (ESA)

After he spoke for over 30 minutes I was appalled and frightened. Not once, in that speech did he mention - or even seem to be aware of the fact - that many people like me were unable to work because of long term health conditions.

He spoke about "modifying the workplace" to accommodate disability. He spoke about the blind and the deaf and those in wheelchairs. He referred constantly to the new soundbite that "Virtually everyone should be on an active pathway into work."

Absolutely nothing he said acknowledged the fact that there are hundreds of conditions that may exclude one from the workplace indefinitely whether they result from a disability or an illness.

At the end of his rather shocking presentation, questions were invited from the sparsely populated Labour Hall and I sat with my hand eagerly stretching skywards like a child in primary school desperate for the loo.

Finally, I was called, the last question of the evening and I asked him "What about those that are ill? What if the workplace can't be "modified" for us? What if we have no chance of recovery and, in fact, will only become more ill?"

He blinked at me. Then he stumbled a bit. Then he blinked again. It was clear that either the thought had never crossed his mind, or it was a question he didn't wish to answer. That was the day I became a "Welfare Warrior"

I lobbied Mr Shaw for months. He never replied.

At Labour Conference that year, I lobbied endlessly and in the end, successfully, to sit with Mr Shaw for half an hour and discuss the issue more fully. He was distracted, uncomfortable and evasive. He had absolutely no answers to my questions and made it clear that he did not want to be there.

Despite following up, he never replied to my correspondence.

Over the months, and then years that followed, not one person in the Labour Party replied to my questions or engaged with my fears. ESA was rolled out and the disaster I predicted unfolded before my eyes.

Now, three and a half years later, it is the coalition ignoring me and they have taken a failing and distressing system and turned it into a living nightmare.

Just as I could see from Mr Shaw's little speech, under ESA, it was those with variable, lifelong condition who were no longer considered "sustainable" and today, we reach a point, where literally millions of us are about to be abandoned entirely within our welfare system.

I have never written an article that doesn't refer to the "sick or disabled." Never, have I allowed those politicians to forget that there are millions of people like me who's lives have been ravaged, destroyed and torn apart by terrible ill health. Every single day, I have bored, annoyed, flustered and irritated those determined to ignore me.

It is a little difficult to maintain. It's an awkward phrase, it ruins my flow! "Sick and disabled" "sick and disabled" "sick or disabled" over and over I play Pavlov's dogs with our psyche to make it clear that one can be rendered less able in a million different ways.

Some disabled people don't like the implications of the phrase. Many disabled people are perfectly well apart from their disabilities, just as many people are horribly unwell but don't think of themselves as "disabled".

In order to bring us together, I never differentiate. In a physical sense, our problems and experiences are very different, but in the fight I want to win, they are one and the same. I want a society that treats us with dignity and respects our abilities. I want the welfare system to reflect that whether you are disabled physically or rendered disabled by ill heatlh.

Before I started to blog, I felt entirely excluded from the discussion. There was no official voice speaking for people like me - not that I'd discovered. I was ill, and our welfare system had never even hinted that that illness was not clearly a barrier to traditional work. Suddenly it was not just questioned, but rejected. Suddenly, a life threatening condition leading to endless surgery was no protection against poverty and relying totally on the goodwill of others for survival.

Well, today something interesting happened.

It wasn't a great day. Politicians were unusually depressing and an article I wrote for Left Foot Forward attracted some pretty disappointing and personal feedback in the comments thread.

A Tory friend on Twitter told me to "man up" which actually gave me the most comfort, because he was right. If I choose to oppose this, I will attract the very people I need to convince, and that is a good thing.

But as I read back through the comments, trying to find common ground or a way to break through the animosity, I realised something amazing.

Nearly every single comment referred to "the sick and disabled".

I quickly checked a few media articles and news stories and with a thrill the size of Alaska, realised that every single one now refers to "the sick and/or disabled". Peeking through my fingers, I made one last check. Yep, the politicians themselves now refer to the sick and /or disabled more often than not.

Millions of people who were previously never considered have now crept into the language of the debate and will now colour the opinions of those deciding their fates.

I'm just one voice and many others have been telling the same story and fighting the same fight - many for much longer than me. But I think this is a milestone. An enormously important step away from an often one dimensional discussion about welfare provision and "ability".

Every time you read the words "sick and disabled" I hope you'll smile. It means our numbers doubled, our movement grew and we found our similarities to unite against the real dangers we all face.

Maybe, just maybe it was one step towards making politicians think differently without even realising they had.

25 comments:

Excellent post, Sue, and I wholeheartedly agree. I am long term ill, and have in recent years described myself as disabled because my illness disables me from living a 'normal' life. However, I'm still uncomfortable with it and it's good to have the blanket extended to us properly.

As for your article that you refer to, I thought you conducted yourself very well, despite the comments to the contrary on there. I also commented, but felt that many of the people that commented were simply typing their own bit with their fingers in their ears, it was pretty much going in circles.

The article comments were very frustrating. It is hard to debate in those circumstances. I really appreciate every voice that joins in!

It is encouraging to see that my articles are usually very popular on the top blogs and again, it has been shared and commented on more than any other. Actually, the worse the attack, the more people come forward to make clever, factual posts that back me up. Without knowing it, the trolls just help me to get more of the debate heard on a wider platform ;)

Thankyou Sue. Yes, I always refer to the 'ill and disabled'. I have a long-term illness.

I am currently writing to people trying to get them to see that using the Social model exclusively and ignoring the existence of the Medical model of 'disability' leads to millions of us being left vulnerable and unsupported. We dearly want to work, we are unable to because of pain, exhaustion, nausea, etc etc.

The DDA says that -

"A person has a disability if he has a physical or mental impairment which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities."

Small steps are like great leaps but its fabulous! I hope collectively everyone standing up for the rights of the 'sick and disabled' can continue to change public conciousness in this way! I have to tell you though Sue you constantly give me hope when I am losing it. Yesterday I made someone cry because I talked about giving up and killing myself on the steps of parliament but today I am ready to take up the fight again, partly thanks to you. Maybe the way to get through to people eventually is to make small tiny steps, its going to be hard but I guess there are a fair amount of people being supportive out there, as many as there are putting us down.

I hope you never give up Sue, I will keep fighting if you do :) I am sure I'm not the only person who feels stronger and more encouraged because of you.

Sorry to be cheeky, but could you please follow me on twitter? (Scottyscartoons) I have recently set up a blog on the same topic as this, and think that the more we can retweet eachother and back eachother up, the more of a solid unit we will all be to fight together. My husband is a disabled welfare rights advisor, and it's a topic close to both of our hearts.

Anyway, sorry again to be cheeky, I don't know if this is bad etiquette but I assume that as we're all fighting for the same cause it can only be a good thing. Keep up the great work on your blog, I read yours and THemingford's blogs regularly, and agree wholeheartedly with you both.

I've decided to do this as an anonymous comment because I'm worried about making this public...but here goes:

My story with ESA started with a family member who is bipolar. They have been this way from a very young age and I was one of their carers. This was hard, harrowing stuff but I didn't think twice about it. What was more hard hitting to their life was that after a breakdown - after a few good years of working - they had to apply for Income Support. It was a three year living hell for them. Atos constantly told them they had failed their assessment and within minutes at a tribunal they would be granted their claim in their favour. It was a complete cycle of this bullshit (apologies!) for years, literally. At six month periods. The hounding for doctors notes, reasons and it got to the point where this person went out and found work because it was the easier option.

As it goes with this person, they had to leave their work within months. They had another breakdown and this time it was onto ESA. The nightmare continued.

A few weeks ago they were sat in another tribunal where their illness was validated by a room full of strangers. All because Atos has a failing system and the previous and present governments fail to see this and action against it.

Now, let's go to my situation. I won't say my illness because I'm worried it will identify me, but I have a chronic on-going condition that has no cure. It is physical. I called Atos up to tell them I cannot make the trek to their test centre - I leave the house once or twice a month if I am lucky and when I do it's a 5 minute walk to my supermarket where I have to sit down a hell of a lot.

They were so rude and demanding. When I explained this to the guy handling the call he told me "Well if you really are that bad we need to see a doctor say this. And even then you will probably have to come into the test centre." His whole manner on the phone was dismissive, rude and plain snobbery. I was judged before I had a chance to explain why I couldn't make it in. Why do we need to constantly prove ourselves to these assholes?!

It's hard enough with goal posts changing in our care plans and health care systems but when it comes to complete strangers judging me down the phone I feel like it's the last straw. After that call I seriously considered doing myself in; I felt like a massive burden to everyone around me and I reeeeaallly didn't need the shit Atos were pulling. I even went on a job search, because I do feel like work would be the easy option. I know I wouldn't make into work and would be fired so in all reality it's not actually the easy option - the easy option would be if I was healthy and was ABLE to work.

But I'm not going to get healthy over night, or possibly ever. A DOCTOR has told me this. Many doctors have suggested counselling just to come to terms with my diagnosis. So how in the hell can an employer bend and shape to that?! Our government and the people they employ to do their dirty work have NO IDEA what any of this is all about, none at all.

This is a beautiful post. I wonder if the minister overlooked illness in whole or in part because it is often invisible, or less visible than the disabilities he mentioned that require more obvious accommodation. I'm not at all excusing it, just trying to figure how the ignorance to invisible disabilities may play in all this.

Congratulations on making progress with your efforts. You know your voice speaks for many. I love the support you get here. I have often gotten that on my own blog, especially when I regularly wrote about my own health issues.

Have you seen the report “ESA/WCA review: Making it work for fluctuating conditions” published by a group of 6 charities (the MS Society, National AIDS Trust, Arthritis Care, the Forward-ME Group and Crohn’s and Colitis UK) as part of the Harrington review? http://www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf

The report calls for major changes to the WCA, especially in relation to chronic, fluctuating illnesses, making some excellent recommendations for improving the descriptors and the assessment process in general.

One recommendation is that the descriptors should be multi-dimensional and take into account the severity and frequency of symptoms and the time taken to complete activities. Moreover, the descriptors should reflect more accurately working activities, and a new descriptor should be added addressing the impact of generalised fatigue and pain.

The report also advises the DWP to develop a definition of ‘work’ for the purposes of the WCA, suggesting that a person found fit for work should be able to work at least 16 hours a week without requiring excessive absences or excessive support. And further research should be to done to find out whether those found ‘fit for work’ are considered to be so by employers.

They also make the ‘radical’ suggestion that sick and disabled people themselves should be asked to provide feedback on the descriptors.

Of course, this kind of basic research with employers and claimants should have been carried out before the new system was introduced in the first place. Hopefully, these recommendations will eventually be implemented, but in the meantime we are stuck with a Work Capability Assessment that was designed by a panel of so-called experts who have never heard of pain or fatigue and have no idea what ‘work capability’ means in the real world.

Excellent blog Sue, I started off with what I thought was a temporary physical symptom, which has since turned out to be permanent with worsening symptoms - this I classed as an illness in the sense that I thought I would recover, it has since gone on to manifest other symptoms including migraine which I think is related as so many other people with the condition get them. It also involves pain and fatigue. I now class myself as sick and disabled as my symptoms fit into both areas as I am disabled by my symptoms. The government and DWP and WCA needs to take these things into account. No employer is going to take on somebody that needs to take between 1 to 7 days a week off and thats just the migraines which I dont think are even accounted for in the WCA. The physical stuff would make it impossible to get to and from work and do work whilst there. I have not yet had a WCA but am extremely worried about being found fit for work as I am not. I am worried about even being able to attend the job centre to sign on when recquired - so would end up being sanctioned. I know this has happened to people already and its immoral. Its akin to asking an average person to climb mount everest with no training!

I wrote a chapter for an academic textbook (which will be published later this year I think) on the boundaries between illness and disability. It's not specifically related to welfare, but I could email you it if you'd be interested, Sue?

It's all a problem with what one understands 'disabled' to mean. There are various meanings, and I won't claim any is more valid than the other. Those who view 'disabled' as including sick automatically (as long as the illness is disabling, of course) views the 'disability' as the actual deficit in capability compared to societal norms. It's the ways in which you are not able to engage in society or normal activities. In that lexicon, I think the term for the underlying condition (when known) is 'impairment', but I'm not sure about that. However, depending on how you understand those terms, it could also be 'illness', 'disorder', 'condition', or 'disease'. So, under those terms, one of my impairments is narcolepsy; one of the ways that particular condition impacts me, the disability it causes, is that I can't get up in the morning without help; another is that I am unable to engage in various activities because I may fall asleep. So, if you have some sort of (the law says long-term) 'thing' (illness, disease, condition, whatever) that leaves you with such problems engaging or participating, then you are disabled. I like this way of looking at things, and it makes sense to me (and it didn't used to). I am told by people who've spent longer looking at such things that this is the real heart of the social model, as opposed to the mongrel-bastardised-daemon-seed rubbish underlying the government's stuff (which they call social, but I gather is more accurately psycho-social).

However, I understand that some people don't feel comfortable with that way of understanding things, for whatever reason, and I won't say it is inherently more right than other people. For starters, it doesn't match common conceptions, though common conceptions are sufficiently confused that nothing could. Some people insist we should volubly spread the understanding I've tried to outline above, and that has some merits, but I don't see it as being likely to succeed. So yes, to be more inclusive, use sick and disabled, unless it's in an academic context where everyone understands exactly what's meant.

Brilliant article. I do the same - always using the term "sick and disabled". And love the points about workplace modifications: more companies should be pushed into doing these, but no modifications apart from working from home will help some of us. And there are still those who are so ill they could not even do this.

Just a short note to, again, say thank you. We must keep fighting and not give them one inch!

Hi Sue, this post is really interesting to me as an MA student in Disability Studies and as someone who has a long term condition which I consider to be a disability. I want to start this comment by saying that I hugely admire what you're doing and your whole approach and agree with virtually all you say. However, and I don't want you to take this the wrong way, I am not comfortable with calling people 'the sick and disabled', any more than I'm comfortable with the term 'the disabled', which is a pet hate of mine but which I realise people will keep saying. We MUST emphasise our individuality and humanity as people, as well as the fact that we have impairments and/or illnesses and that we are disabled by society as well as by our illnesses and impairments.

So my preference would be 'sick and disabled people' - NOT 'people with disabilities', as that implies that our disabilities belong to us, which they don't; as people who have illnesses or impairments are disabled by societal factors (although self-evidently our impairments and illnesses also cause us difficulty in their own right). As Sam says, this is the 'true' social model of disability, and one of the ways in which society disables us is that it decides that if we can't do 'normal' paid work we can be significantly disadvantaged and not provided with sufficient money and resources to live as equals with non-impaired people. I did an essay on the social model of disability and the impact of impairments for my MA course which I will email you. It's a bit academic (you have to be at postgrad level!) but you may find it interesting - particularly a bit towards the end about 'internalised oppression'.

Plus, and I mean this, I do want to add my thanks to you for sharing your insights and writing skills with us. You may not be in paid work but you are demonstrating that you can do fantastic work even while you're ill at home; there is great value in what you do and it is discriminatory that this is not judged as valuable by governments across the political spectrum.

I think that's a good point Jane - "Sick and Disabled people" does humanise it more.

Terminology is important, though I too hate words that label us. I do feel uncomfortable if I describe myself as disabled - I feel like a fraud because society does not have any real concept of what the term disability ought to cover.

It's a minefield, but on the whole, if there must be labels, I want to include a wider definition than before to at least start people thinking along the lines of illness being disabling.

I don't have your influence but am a very long term poster on the BBC Ouch! board. Quite early on I became aware of this issue and have bored everyone silly with it since ;) I hoped that I would maybe change the opinion of some of the more influential readers who in turn could do the same to others in power. Ripples in a pond...

I felt it needed to be done as I thought the utter devotion to the social model of disability could lead to trouble for sick people if not approached carefully. Many "typically" disabled people expressed anger at being thought of as sick and again and again said that disabled wasn't being sick.

The idea was difficult to explain at first, with my describing myself as "both sick and disabled". This got even more complicated when I did in fact develop "typical disabilities" such as wheelchair use.

I believe I eventually got my idea across with some posts explaining that there are disabled people which include the well known "wobblies, wheelies, blindies, mental health", etc an idea well accepted among the Ouch! community. But there is also a group too often forgotten, "the sick". Sometimes there is overlap between impairments, sometimes not. But we are all disabled together and no group must be forgotten when we are fighting to get what is best for us.

Healthy disabled people should never be thought of and treated as ill. But sick disabled people should not be expected to do what a healthy person can.

Problem with 'sick and/or disabled', if the hope is to encourage people to think of those disabled by sickness, is that it creates the impression that those with illnesses and those with disabilities are separate groups. They are independent, yes, in that people can be in either without being in the other, but it can create the impression that 'sick' is contrasted with 'disabled'.

I suppose one problem is that people see strong examples of those who are 'disabled but healthy' (paralympians, anyone?), and that's the most prominent image of disability.

But then, how do we define 'sick' or 'illness' versus healthy? Maybe there's something to be said with recognising that everyone has a different baseline for health. Maybe the word 'healthy' is just problematic when applied to people. I don't know.

Oh, and I'd like to see that essay too, Jane, very interested, and working at a postgrad level myself (in educational research, and previously in computer science).

Sam - I'm afraid my entire life experience has to disagree with you. I am unwell but society does not see that as a disability or indeed, often, as disabling. Using both terms increases our impact, increases our understanding and ought to add to our unity, not divide us. I am rarely disabled by my illness in the traditional sense but it has ruined my life in untold ways.Disabled nust isn't broad enough yet we face so many similar challenges. I believe we can choose to see unity in terminology or division but any successful right movement expanded and embraced a broad church of support. If those with chronic illnesses are excluded from the debate, they simply remain invisible and misunderstood.

What I mean is that people with chronic illnesses are (often) disabled in the sense of the (proper) social model; I'm not sure what you mean by 'disabled ... in the traditional sense', largely because there doesn't seem to be a coherent and consistent meaning to the term in society as a whole. So there's a terminology problem. Some understand disability in a way that excludes those with problems that don't impact their life (at least in theory, not sure there is such a thing) and includes chronic illnesses that do impact their life in a disabling way. Others may have other coherent understandings, and most people have no coherent understanding. There are two choices I can think of that make sense:

Use 'sick and disabled' (or 'sick or disabled', as appropriate). The downside is that this can reinforce the idea that sick is independent of disability, rather than something that leads to disability.

Or, push really hard for a common and coherent understanding consistent with the social model (at least, the one I've used - there are variations). This would allow for a properly coherent and unambiguous public debate. The downside is that it may well be impossible, and would certainly take a lot of time and effort.

So I'm not saying it's wrong to use 'sick and disabled' - I'm saying we should be aware of the problem that can come from that, and try to promote a better understanding of disability, and that sickness can be disabling, as well.

Sam right now we are inheriting a system which has decided that disabled people are just people with a (often physical) "traditional" disability (ie wheelchair, walking stick, blind, etc). None of these people are ill, they are just not working because of physical obstacles such as lack of ramps, computer software and so forth. A dangerous and obvious train of thought which we are already seeing is that once this is provided, anyone who persists in not working is obviously not looking hard enough or is lazy and workshy.

Leaving aside for a moment the difficulties of finding a job as a "traditional" disabled person anyway, they have forgotten and so we have to remind them that disabled people includes sick people. We have to make them understand that although *some* sick people will be able to undertake some work with help such as flexible hours, work from home, etc, others are simply too ill to work and that that will always be the case. These people are not shirkers and should not be made to feel so.

Maybe there will be a time when the general public are sufficiently informed to automatically include sick people amongst the definition of disabled people. But until that time comes, and particularly right now I think it is vital to speak of "sick and disabled people".

I totally agree that if in common parlance 'disabled' does not include 'sick' or 'ill' (and there are good reasons why it doesn't), we must use 'sick and disabled people' to ensure that we are inclusive. The social model works a great deal better for people who are 'disabled' but not 'ill' and if people try to use it (or a version of it which demonstrates a lack of understanding of what the social model really is, as they usually do) in relation to sick people the outcome is nonsensical, hence some of the more bizarre aspects of the current and proposed welfare reforms. In many ways, being disabled and being ill are very different; however, many of us are both disabled and ill, particularly those of us with progressive and fluctuating conditions.

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.